Carer of dementia sufferer

[joandelta]

Hi

I'm very new to this site and don't know how to use it properly yet, so please bear with me.

I am caring for my 86 year old mother who has vascular dementia. I am finding it very hard to cope with her as she constantly states that her parents are still alive (they died in 1961 and 1962) and her brother is still alive and was here the other day (he died in 1989). Can someone please advise me on how to answer her. I find I am getting very annoyed with her as when I try to tell her the truth, she won't accept it and says that I don't know what I'm talking about. By the way, my mother has only been with me for 7 weeks so I know it's early days, but I really do need some advice.

Thank you
Joan

 

[christine_batch]

Dear Joan,
Welcome to Talking Point.
Later more people will come on line and give you advice.
What you are going through is quite common but other will tell you how they dealt with their situations.
Best wishes
Christine

 

[May]

Hello Joan and welcome to TP.

This is a very common occurance, knowing that doesn't help though when you are on the 'sharp end'! We had this with my Mum, she thought her Mum was still alive (died 1968), nothing would convince her otherwise, after doing exactly what you have, we found it better to try and distract her attention to something else. If this wasn't possible then we would say that 'Mum's 'pop out for a while' or 'she's busy today' or 'she's shopping' etc. I know, lies all lies! but much better than hitting your head against a brick wall a thousand times a day..... also kinder to the person concerned. learn to lie through your (clenched!)teeth... it's in everyones best interests... and don't let the 'guilt monster' sit on your shoulder whilst doing it. Come back to TP often, the absolute best site for info and support, we all need 'virtual' shoulders to cry on at some point. Take care

 

[jenniferpa]

Hi Joan and welcome to Talking Point.

I don't know whether it's any consolation to know that you are not alone in dealing with this, but you aren't - this is very common. How you deal with it is going to depend very much on your mother's reaction to what you do tell her. My mother was one who, while she forgot that people had died, was not upset if that was pointed out to her. Many people though: it's as if they've heard the news for the first time, each time, and they have to grieve each time. Other people (like your mother) will refuse point blank to believe the truth. In those situations I feel quite strongly that while honesty may be something we practice in all other areas of our lives, this in one time that honesty should go hang. Avoidance and distraction can be the first resort, but it's probably a good idea to have a lie in reserve should those not work. A fairly effective distraction technique can be to use the question they ask as a "jump off" point: so if, for example she says something like "when is dad getting home from work" you say "oh, what job does he do?"

 

[Margaret W]

Hi Joan and welcome to the club.

My mum developed AD after my dad died, and the first signs were her saying he had come back from the dead. At first she knew it was her imagination, or accepted that, but later she became adamant that he was there. She even made him meals, and got cross that he had gone out without eating them, and even later called the GP to ask him to visit because her husband was ill (boy, that made them take notice of what I had been saying for the past year!). Later she asked me if I had seen her mam and dad recently - they died many years ago.

I gently told her that they were dead, and that seems to have worked for her for the most part. But when she was in hospital, she made friends with a (highly intelligent) lady who had just learned that her father had died, and had been buried without her knowing. He had in fact died about 30 years earlier. She was quite distraught about it, but the nursing staff told her lies to get over the issue. They told her that a neighbour had seen to the funeral arrangements, and arranged a nice wake for him, and all went well, and she was satisfied with that.

I think you have to just see what suits your mum, and it seems that with this illness you can change your story and it is still acceptable to the person. So if saying "Mum, she died 20 years ago" doesn't work, you can try "I think she is fine at the moment" or "I'm not sure, I'll give her a call and find out", or as other people have suggested, just divert the conversation to "I don't know, but what did you have for lunch today".

I know it goes against the grain to be less than honest, but we have to bear in mind that a person with dementia doesn't absorb the truth in a normal way.

Good luck with your mum

Margaret

 

[Grannie G]

Hello Joan.

I understand how upsetting it is for you when your mother insists her parents and brother are still alive. Does this happen throughout the day or just at certain times?

If it just happens during the late afternoon/early evening it is called sundowning, and is a time when those with dementia seem to want to return to the family home of their childhood. This happens to my husband at least once a day.

My husband talks about his grandmother and wants to return to her farm. He accepts his mother and grandmother will have died but believes the farm is still functioning and other family members will be waiting for him.

Everyone is different but so many people do seem to get great comfort from `seeing` or talking about family members from their younger days.

My husband accepts they are dead. If your mother will not accept this, perhaps you could go along with it. Tell her you`ll ask them round or arrange a visit, anything that will satisfy her. She will probably forget after a while, although it will happen again.

However frustrating it is for you, there is no point in getting annoyed. Your mother cannot help it, it is part of the condition.
So when it happens again, come and offload on Talking Point [TP]. There will always be someone here to identify with you.

Love xx

 

[Brucie]

Hello Joan

it is difficult at first not to try to make them understand what we believe to be a fact that is indisputable.

Can I put another slant on it?

People come into this world, then hopefully a long time after, they leave it forever. When they leave we call it dying because that is a physical process that happens to all living things. They hopefully live on in the hearts and minds of those they have loved and left.

People are different from plants, as far as I know, in that we can retain memory of those who have gone. [If there is a plant on the forum that can tell me differently, then I'm happy to listen ]

Passing on memory of those who have departed is the only form of immortabity, in my opinion.

My grandma died way back in the 1970s, but to me, she is still around me. Every time I drive through Newport, Gwent, she is still there for me in my memories and thoughts. Boy would I love to pop in for some of her Welshcakes!

For your Mum, her parents are still around, and to say they are not is to confuse and even anger her. For her the interface between reality and memory may be more fuzzy than it once was, but that is the nature of dementia.

So, if you say to her "they have gone away for a few days but we can call them later", it is not lying in any normal sense. It is entering her world, putting her mind at rest for a while, and if you have to do that continually, then so be it.

 

[Tired_MariaUK]

This is exactly what we go through with 87 year old MIL. She has Sundowning and it gets really bed while we are trying to coax her into bed. She use to accept that all the family had died years ago. She went through a stage when she would believe anything. We could tell her the moon was made of cheese - okay. But, now she will not accept anything. She thinks we are crazy. She is shocked when we say they are dead. So, I told DH to tell her they are on holiday and will be back in a few days. She found that a bit easier to believe then the death story but yet she was amazed they had not informed her. Then she wouldn't accept that story anymore. So, instead of saying something so harsh as they are dead, we would say they are in heaven looking down on her and taking care of her. That worked for about 5 minutes and then she thought we were crazy.

I've tried distraction. I bring the dog in and start talking about here but when she's really bad with this it's all she can think about it. It nearly drives me mad. Nothing I say will pacify her. I feel like locking myself in my room and just let her pace up and down the hallways asking and looking for all the dead people.

 

[fearful fiona]

Dear Joan,

Welcome to TP, it is a "life saver" for when you feel on your own caring for someone with this terrible disease.

Your problem is something I - along with many others - are facing at the moment. My Dad died at the end of February and unfortunately because of my mother's very bad state of health (under section in the psychiatric unit of the hospital), my brother and I had to take the difficult decision not to include her in the funeral arrangements, although I did tell her - several times - that we had lost Dad. However, Mum still thinks he is around and if I tell her he has died, it is as though she is hearing the news for the first time and gets very distressed. So I have simply stopped telling her and do what the others do, distract her. It just seems to be best for her and if we have to lie - or be economical with the truth - then so be it, this is a terrible illness and we must do what we think is best for our loved ones who have been inflicted with it.

Brucie, I loved your comments, it has put a new slant on things and I do think people's spirits live on after the body has given up.

 

[Skye]

For your Mum, her parents are still around, and to say they are not is to confuse and even anger her. For her the interface between reality and memory may be more fuzzy than it once was, but that is the nature of dementia.

So, if you say to her "they have gone away for a few days but we can call them later", it is not lying in any normal sense. It is entering her world, putting her mind at rest for a while, and if you have to do that continually, then so be it.

Brilliant, Bruce!

Your post should be preserved somewhere, it's the best clarification of the situation I've read.

I never had that problem, because of John's lack of language, but I see it so much in people in John's unit.

 

[LIZ50]

Hi Joan
My mum also speaks about her mum and will ask me out of the blue "has mum phoned today?" and I have learnt to say that she has and she is fine. To begin with I used to try and tell mum that her mum had died many years ago but she then became so irate with me that I have realised that it is better to go along with her and tell "tiny untruths!" That way, I feel that I'm not causing her any distress by trying to bring her into my world of reality.
It's strange really how dementia puts a different slant on things for them as a close friend of Mum died at the weekend and I um'd and ah'd whether to tell her or not because in the past she would have been extremely upset. Anyway, I took the bull by the horns and told her and she said "oh that's a shame isn't it?" and carried on watching the TV. I really don't think it registered and she hasn't mentioned it since. Needless to say, I shall be going to the funeral on my own!
After looking after Mum for some time now, I have realised that it's better to sometimes be economical with the truth than argue with Mum although in the beginning I will admit I found this very hard to do. As Margaret said in her reply people with dementia don't absorb the truth in a normal way and that really is true!
Love Liz xx

P.S Brucie - I love making welsh cakes - my Mum is from the Rhondda valley and the recipe has been passed down many generations. Maybe, you can pop in for one of mine one day!

 

[joandelta]

Thank you

Thanks to everyone who replied to my message, it makes me feel that I am not alone and so many of you are going through the same thing with either parents or partners.

Once again, thanks to you all.

Joan